I thought I was a bad listener. It turned out I couldn’t hear it

I thought I was just a bad listener.

I didn’t like podcasts. I routinely interrupted conversations asking “what?”, but couldn’t keep up. I could barely detect the lyrics and tended to prefer classical music. I studied literature in college and graduate school, so I assumed I was a textual learner. Conversations were difficult, especially in crowded places; I attributed that to a lack of personality.

Maybe I was easily distracted, I told myself when I turned off a podcast after a few minutes. When I lost track of what friends were saying, I reasoned that I preferred quieter spaces to loud bars.

A few years ago I started turning up the volume on my television set and turning on the closed captioning. Streaming technology had poor sound quality, I thought.

In 2023, I took my three-year-old daughter to an ear, nose and throat doctor after she suffered from frequent and repeated ear infections.

As the doctor discussed ear tube surgery to help my daughter, I talked about my own recent frustrations with hearing. When I worked as a creative writing instructor, I found myself putting a hand behind my ear to better understand what my students were saying. Maybe he can clean my ears and everything will be fine.

He asked me a series of questions. Did I think my hearing was getting worse? When I said yes, he recommended a separate appointment with an audiologist.

I showed up a week later, slightly annoyed – this was a lot of steps for what I assumed was a simple ear cleaning. But after a hearing test, the audiologist came out of the sound booth and explained that I had congenital hearing loss.

At age 41, with no family history of hearing loss, apart from age-related loss, I was diagnosed with moderate mid-frequency sensorineural hearing loss, which means a nerve-related disturbance in the inner ear structures. It is commonly known as “cookie bite” hearing loss because of the U-shape it makes on an audiogram – like someone taking a bite out of a round cookie. It’s a nice name, but I was stunned. I didn’t expect this.

The most common sound at mid-range frequencies is human speech, according to Winnie Fu-Feng, a pediatric audiologist for Mass Eye and Ear at Mass General Brigham. Therefore, I did not understand many conversations and felt that people were mumbling.

The most common types of hearing loss Fu-Feng sees are age-related losses in adults or exposure to loud noise. In children, conductive hearing loss is the result of multiple ear infections. Cookie bite hearing loss is the rarest form. It “accounts for only 0.7-1% of all sensorineural hearing loss and is genetic,” Fu-Feng said.

For cookie bite loss, early detection is critical so that a patient can be fitted with hearing aids, which is the only way to mediate the loss. Cookie bite loss cannot be reversed, nor does it improve. It can also worsen as a person ages, and that is what I experience. Fu-Feng recommended that anyone who has concerns about their hearing or someone they know talk to their doctor, she said — input from friends and family is important.

My audiologist and Fu-Feng gave reasons why my hearing loss went unnoticed for so long, even though I was probably born with it. I was born in 1982, and in the US universal hearing tests for newborns were 10 years in the future. I had no speech delays, passed hearing tests in school and performed well in school. I was able to adapt until I couldn’t anymore. It went unnoticed for decades, until my late thirties. Then I noticed that I had trouble understanding conversations, turning up the volume on the television, or having difficulty hearing in loud places — all signs of hearing loss, Fu-Feng said.

I began to remember many cases in my life, even in high school, when I could not understand the instructions of a teacher during a play rehearsal. Even at a young age, I assumed my listening skills were the problem.

During my test with the audiologist, she noticed that I was reading her lips and following her body movements during our conversation. I had no idea I was working so hard to communicate with others.

The audiologist fitted me with hearing aids. As I left the office, shocked by my diagnosis, I asked myself: What did I miss? What the hell did I agree to all these years? As a journalist, I wondered if I had made major mistakes during interviews. Would I have said yes in certain situations to colleagues, baristas, friends, and my children, even though I probably misunderstood the question?

MNew hearing aids made the world incredibly loud. Even my hair was now making noise, brushing against the hearing aid’s small microphone, which carries the sound to the amplifier. After two weeks of noise overload, I started to adapt. In class, I could hear speech more clearly – I no longer had to clam up my ears to catch snippets of conversation. About a month after I got my hearing aids, I went to a folk concert and almost cried: I could now pick out the lyrics. It was beautiful.

Hearing aid technology has improved dramatically; my pair is Bluetooth enabled, so I can listen to music or answer a call directly through my devices, which makes me look like a spy, my two young children tell me.

Following a groundbreaking 2011 study from Johns Hopkins on the link between hearing loss and the risk of dementiapublic perception of hearing loss has changed dramatically, Fu-Feng said. Before the study, Fu-Feng explained, people joked that hearing was just part of growing older. Now there is a broader understanding of how hearing loss occurs and how it can affect health. For example, hearing loss can lead to social isolation and put people at risk for depression and other health problems.

I hadn’t pieced together the clues about my own hearing loss because I was young. I felt I didn’t fit the profile, but I now realize that this stereotype prevented me from seeking help.

Because cookie bite hearing loss is genetic, my two children have now been screened and so far their hearing is normal. They are screened every three years.

I have an annual hearing test to check whether my hearing loss has progressed and to fit my hearing aids. I wear both hearing aids daily and stand up for myself in everyday situations, such as when I ask students to speak up in class. When I’m in a loud restaurant, I ask people to look at me so I can read their lips. Since my diagnosis, I understand that it is not a matter of listening carefully or being easily distracted. I can now fully hear the chatter of my two children, and I am loving every moment of it.

But I still find the sound quality of a streaming movie terrible – and I always use subtitles.

• Maggie Neal Doherty is a freelance journalist, opinion columnist and writing instructor from Kalispell, Montana.